Chemo starting June 2018
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Lulabela, yes, me. I believe it's from the growth factors (neulasta, filgrastim). I got chemo on Monday, tuesday was not easant but managable. on wednesday I got the shot and it got me down. on thursday another shot and I went even deeper - I had pain in my arms, legs, jaw, upper back and neck up to the scull and a terrible headache hit me and even woke me during the night. I thought this is it, I have brain mets.... well, I took paracetamol pill (the first one during chemo) and it got better the next day. on Saturday I was feeling ok. I believe it was from the two consecutive shots
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lulabella, I have all of these, except for burning throat. Take a painkiller. Sorry about it
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Lulabella:
I get a tender esophagus and acid reflux the last infusions but it sounds like you should run your side effects by your MO or chemo nurse or another health care professional in case it's an allergic reaction.
I haven't had bad pain from the Neulasta (yet) but I know many do. My legs/pelvis got a little achey the last times and then I took Claritan...it helps to stay off my feet during the bone aches.
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I had sore esophagus. First cycle bad acid reflux. Taking meds for it now and it has helped. Cycle 3 and 4. Mouth rinsing helped with thrush in my mouth, but I also had it down my throat and esophagus. Had to do Nystatin rinse and swallow (MO prescribed). Helped a lot with difficulty swallowing and pain.
I had the series of Neupogen shots. Got worse with each one. Pain seemed to peak about 12 hours after last one for about 12 hours. First round pain was very bad. Not quite as bad with subsequent rounds of AC. Had first Taxol on Friday. Few aches, but ok. No shots this time as doing the 12 weekly.
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My pain has never been as bad as the first round. I admit I kind of cheated this round. I had some leftover steroids from when I screwed up during round 2. I have had this stupid cyst pimple on my chin that disappears with each round of steroids and comes back about 2 days after I stop. So I have taken a few extra this round in a taper fashion, hoping to get the pimple to stay away this time. I think it has helped my side effects. I have not needed anything more than ibuprofen and claritin for the pain. I think it has made me hungrier though, but since nothing tastes right, I feel like I just keep trying to eat something and then I'm like, no that's not what I wanted. My stomach has also felt a little wishy washy, but nothing bad.
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I had my second dose of Taxol last week, liver enzymes were elevated. Called back for another appointment today with my MO which I wasn’t supposed to see until next month. Repeat blood work today showed my liver function tests are not elevated 4x the normal limits. On palpation my liver is so sore I almost flew off the exam table. I am so achy and sore all over, I just feel like crap. They took me out of work for the week, more blood work Thursday if still on the rise liver ultrasound and PET scan. I’m just so defeated right now. This is supposed to be the “easier” part and my body just isn’t cooperating. ;
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Staylynn:
Sorry you are having issues.
I had to have my dose readjusted due to some issues. I seem to be ok now. These chemo side effects seem to be fast moving like storms that will pass.
I was too weak to get out of bed yesterday until about 4pm and then things cleared up and I managed to walk a few blocks to the market.
I'm having a nice meal now and feel ok but may be doubled over with stomach cramps later.
After my 3rd infusion, my 4th was delayed a week due to the complications. I started to recover, SEs went away, I walked a mile to the market, did some shopping and on my way back a strange sensation came over me and suddenly I had metal mouth.
This is weird stuff but it will pass.
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WC3 thanks for your response. I’m just ready for this to all be a bad memory!
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Staylynn, I also tolerate Taxol much worse than AC. Acupuncture helps with the side effects, but not 100%. Still feel crappy. 2 done, 2 more to go. Hope I’ll survive them one way or the other.
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Bgirl-I have same esophagus soreness too from Thrush and doing the mouth rinses regularly now. Just finished second Taxol. Days 3and4 after first infusion left me totally exhausted and had to start taking nausea pills again. Only 10 more weekly Taxol infusions! So many fires here in Washington and western Canada that we are socked in with smoke. I try to walk 2-5 miles a day, but cannot breathe well with all the smoke. I am wondering if the curtailed walking is what lets the fatigue take over. I may wear face mask and head out tomorrow for a bit.
Has anyone tried cannabis? It is legal here in WA, and wondered if it helps. When I asked Dr, he just said that if I am not a current user that now is not the time to experiment. But if it alleviates side effects and keeps daily life moving, maybe worth a try? Most dispensaries have knowledgeable sales people from what I hear who would be able to suggest products..
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Washington4 - I am up for round 2 of Taxol on Friday. So glad for that 2013 study that said that the 12 weeklys are just as effective as 3x4. Hoping to avoid some of the toxic effects. A couple of numb toes where I already had a damaged nerve in my back. Weak link I guess. Otherwise, like you, exhausted day 3 & 4 and terrible acid reflux even with the meds. Can not imagine walking in the smoke. My asthma is very sensitive to particulate matter. Can you walk indoors somewhere.
CBD oil or cannabis, legal or not, I would approach with caution. We have legal here too. Friends of ours run a medical clinic. If at some point you want to consider it, I would recommend going that route. Talked to them after first round of DDAC as it was horrible. They do their research and I found out that the A chemo which is not supposed to be taken with grapefruit (hospital pharmacist) should also not be taken with cbd oil as it uses same enzyme or something and could have interfered with how it worked. So someone VERY knowledgeable is important. This crap is bad enough and to not have it work properly would be tragic.
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I tried CBD oil with near no THC (80/20) during my third round of TC. You know that feeling around day three where you are exhausted with general discomfort but can't sleep? I think it made me tired enough to nap during those days. I don't entirely trust the industry in their cleanliness and purity so I've skipped it this last round. It's effect is so minimal that I'm just dealing. I don't know if I'm the only one that does this but now that I'm coming to the end of chemo all the fears I've pigeon holed away to get through it are coming up. I have exchange surgery in three weeks and will be starting Tamoxifen a month after that. I've been pain free from surgeries for months now and have to go back to being cut up with anesthesia, revisions, pain meds and unknowns. The Tamoxifen scares me too. I've made it through chemo without too much cognitive impairment but I've been out of work this whole 6 months and there's no real pressure to think. I'm starting Tamoxifen just as I return to my job. I'm a water treatment operator at a big municipal water district. It takes my brain! I'm a 54 year old woman surrounded by 35 year old men and have always had to be on my toes. IT just feels daunting Excuse all my scaries. This could just be because I'm on day 5 after chemo.....
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Hives, anyone?
I have developed a horrible case of all-over-body hives. It started midday on Day 9, yesterday, and this is my #3 infusion cycle (of 4 xTC). I am taking some of my steroids + also Benadryl, and waiting for further advice from my oncologist's office about how to proceed. To the advice-nurse on the phone, it seemed weird that this was so delayed, if it's a chemo reaction.
However, I can't think of a single other thing that's changed, in diet or supplements, or whatever, so I think it must be a chemo reaction. Anyone else hear of this, and especially a good week after the infusion day? The hives arose together came along with back spasms.
It's HORRIBLE. I got to sleep last night after a dose of Benedryl meds + also Ativan + Cyclobenzeprene for the back spasms. This morning, I took one of my steroid pills, and that helped A LOT, plus a Claritin, so the itching has been reduced, but the welts are still huge. Called my oncologist's Triage Nurse chemo advice line, and the nurse will return my call eventually after consulting with one of the docs--mine is on vacation this week.
I have hives all over my scalp, torso, arms, neck, back....maybe 200 of them, and they all itch terribly. I've knocked down the itching from the Benedryl and the steroid, for now. Also, it started the day that I stopped taking morning/daily Claritin. I suspect that if I'd kept up the Claritin for 2 more days (through day 8), maybe this wouldn't have happened---this is the first cycle I've stopped the Claritin at day 6. The Claritin is in my protocol to help me manage the Neulasta (spasms) pain, so maybe I just didn't knock that histaminic reaction down quite enough. Hoping my oncologist's office will suggest a reasonable plan going forward, of how to knock down the hives and get comfortable.
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I got my worst hives too from TC during my last round around day 9. Topical cortisone cream and Benedryl helped. I expect Claritin is a good idea too. The cream and Benedryl was sufficient for me. It felt like roving welts moving around my skin. I get how awful it is. Sorry you are going through this. I'm on day 5 right now and waiting for the itching to start.
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HikingLady:
Our immune system is being decimated and reborn each cycle so I think developing allergies during chemo might be fairly common as the anti bodies repopulate. After my first infusion I developed relentless itching for a day on the palms of my hands after I touched a container of spices and a screw driver.
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oh no Hikinglady that sounds awful! I hope you feel better soon.
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Swollen taste buds. Just two on the tip of my tongue but they hurt like paper cuts. This happened last time as well but I thought I was careful enough this time to avoid it.
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Completed DD AC regimen and started Taxol last Friday. Day 1 & 2 were okay. Joint and muscle pain on Days 3 to 6 and it was brutal! Every joint in my body ached. Took 2 Tylenol 3's every 4 hours and it only dulled the pain. I've also have had a wicked headache. Not sure what it's from. Finally starting to feel better today - joint pain is manageable by regular Tylenol, although headache is still kicking around. Hopefully my Oncologist can do something so I don't have to go through this again.
No nausea or fatigue with Taxol. I'm pretty much eating normally. No food adversions this time around.
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Today would have been my second DD of Taxol and I was going to give my oncologist a piece of my mind because he had told me that Taxol was easier than AC. What a load of BS! I had so many SE's from it. One of them being a bad rash that covered my torso that I had to take extra allergy meds for which messed up my sinuses.
The oncology nurse and the MO put their heads together on my case and came up with an alternative chemo treatment called Abraxane. It has the same ingredient in Taxol, but the way the ingredient is packaged so it can be administered to the body is different so it does not cause an allergic reaction. Therefore no Benadryl before Abraxane is administered. I ended up not getting a treatment of the new chemo today because we have to get it approved through insurance first.
The bummer part is that the new chemo is given every 3 week and not every 2, so my end date just changed by 3 weeks. At least I got credit for the one Taxol I got.
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Hey ladies, I just finished chemo on August 8th and last Friday I noticed a small bump in my armpit. It has gotten bigger since and I am freaking out that it's a swollen lymph node. I've contacted my NP and Oncologist and sent them pictures but still waiting to hear from my MO about next steps. It's about the size of a pea. Normally, I'd chalk this up to an ingrown hair or pimple but in this situation, every little thing sends me over the edge. It kinda scares me that this is my new normal now. Has anybody else experienced this?
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Domzie30218: I did have an experienced with what I thought was a swollen lymph node as well. It lasted a few days and then gone. I asked my MO and she thought it wasn’t anything to worry about but haven’t had since that one time. Hope that helps but I’m the same way everything throws me over the edge!
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petty rant: i shared a photo to a group of friends of me ringing the bell in the infusion room on my last day of chemo last week. Everyone in the group except one of my sisters congratulated me. Just now that sister asked me when my next chemo is going to happen. She has been unable to keep any of my dates straight. She asks and I tell her over and over when things are happening and she promptly forgets. I have a giant support network including another sister. This dopey girl complained to my mother that she feels left out in my treatment. How can she possibly not understand why?
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I am in the taste desert. It takes about three days to cross.
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rant away rachelcarter35! My current pet peeve is people saying "so you're done, right?" because they know I had my last infusion. Well, sort of, except for the 3-4 weeks of crappy side effects and then the 3-7 weeks of daily radiation! Everyone means well, and having the last chemo is a big deal but to think this is suddenly "over" is a little of an understatement. Stay strong ladies!
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@HikingLady, I also had a delayed allergic reaction to Taxol -- no problems until my blood levels went down in week 5, and then I was super itchy with measley welts and choking, grossly, on continual post-nasal drip. It all went away when my cell counts came back up. I wish you as easy a resolution!
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Is it possible that your hives reaction could have been to Neulasta, or was it traced to have been definitely from the chemo? Thanks for sharing your experience. Ugh.
I got on a treatment plan for my hives yesterday after it had gone on for 2 days and I couldn't manage it--saw an oncologist (mine was on vacation). So, I'm on dexamethasone + antihistimines and it's working. Since the hives reaction started on Day 8 (after 3rd TC infusion), there's a possibility that this is a reaction to my Neulasta shot on Day 2, and another less likely possibility that it's a reaction to Taxotere, but the oncologist suspects Neulasta as the more likely culprit. So, maybe I'll discuss with my oncologist whether to drop the Neulasta at last/final next infusion on September 4, depending on what my WBC count is that morning, and his advice.
I'm going to hope that my new protocol for keeping the hives down does work. It was horrible living with that for 3 days before we got a good treatment plan to control it. Better today, staying hopeful. Grateful for steroids. Hoping the locusts and frogs and fiery hail don't come my way next, as in the 10 Plagues....
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@HikingLady, no - I'm not on Neulasta, just Taxol. (If I remember right, I'll get Neulasta later to prep me for the AC.) I am told people usually react to the Taxol in the first two weeks if they're going to, but there are some outliers who get the rash later...
Though honestly, if they can control your symptoms, it doesn't much matter what's causing them. I swear if you spend enough time googling, you'll find someone who has had every SE in reaction to every chemo combo...
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yellowb Thanks for this--my oncologist said the same. No way to know the cause of these hives, and we can treat it, so we move forward. I feel like I AM that person who's getting every side effect I've ever heard of. Hives, all the GI tract issues...I'm getting the Full Tour of Chemolandia, for sure.
A long game of Whack-a-Mole at the carnival. I'm waiting for all the 10 plagues of Egypt to descend at this point, but haven't seen the fiery hail or locusts yet. So grateful for this forum, good cheering support, and my compassionate and skilled doctors.
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I agree with WC3 also that when our immune systems are decimated this way our bodies are going to be extra reactive. I even ended up with a rash in reaction to some fragrance in an organic moisturizer I was using for my mastectomy scars. It was from the health food store but there was some kind of fragrance in it that my body rejected.
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Oh, ladies I am so sorry to those of you having yucky side effects. It definitely makes recovery seem sooooo much longer. Hoping we can all see the light at the end of the cancer tunnel soon!
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